Just wondering what your thoughts are on getting the H1N1 (swine flu) vaccine? My 3 year old son is on 2 immunosuppressive drugs, Prograf and Prednisone. His Neph. wants him to get the vaccine as soon as it's available and used the term "devasting" to describe what would happen if he were to get the swine flu because his immune system is not 100 percent. I'm very worried that he may be exposed to the swine flu since he is now in Preschool and I know a few people in my city and surrounding cities who have had it. I have a long list of questions for the doctor already, like "How suppressed really is his immune system?". I have been researching this new vaccine for the past 5 days straight and so far, I don't like it at all. If my son was NOT on meds that affected his system, I would NOT allow him to have the vaccine. But, because of his situation, I'm not sure what I am going to do. He has had the regular, seasonal flu shot, but that one will not protect him against the swine flu. Have you or you child gotten the swine flu while taking immunosuppressive meds? If so, what was the outcome? Your thoughts/suggestions would be appreciated. Thanks!
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Swine Flu Vaccine-Will you/your child get vaccinated?
- By kcsmommy
- Posted October 12, 2009 at 3:22 pm · 21 replies
- In Children with nephrotic syndrome
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CellCept Cytoxan Prednisone Chickenpox Diabetes Fever Stress
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- By MikeandJack
- Posted October 13, 2009 at 10:03 am
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I'm in the same boat with my 4 year old Jack. But he hasn't been on meds for about 3 weeks. Scares me to death, I'm not sure what to do either...doctors say he needs it but, i just don't know. My others kids will not be getting this vaccine! But Jack is different...What to do?
I think we are goin to go without it....hope his immune system is up, and keep the hands washed!!
- By razn3
- Posted October 13, 2009 at 10:18 am
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My daughter is also on prograf and our pediatrician told me flat out No!! He will not give it to her. He said that from all the studies and research he has seen on the shot, the side effects from it are far worse than the actual swine flu. My town has had several cases of it and none were severe. Mainly high fever for a few days and cough. That's it. Also, my cousins infant daughter had it and she was never hospitalized. She also ran the high fever and was given anti-viral meds. Our ped also told me that over 90% of flu cases will be swine flu. He said that they have made it seem far more worse than it is.
My thoughts on it are this.....if they spend YEARS testing all other immunizations, drugs, etc why should they expect me to think that one they only spent a few months on is safe to give my daughter? Scares me to death!
Gracie is also in preschool and so far she has been fine. We will not be getting the shot. If she displays symptoms we are to go to the doctor and get the anti-viral meds. Also, I heard(can't remember if on the news or from our ped) that the shot is a live vaccine. That right there should make it a big no if she is on prograf and/or pred.
Hope this helps! Good luck!
- By chasesmom
- Posted October 13, 2009 at 1:14 pm
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It's funny how different doctors are in their opinions on this! My son's doctor is insistant that he get the H1N1 shot. He's already had the "regular" shot. He is also on prograff and they said that because of his weakened immune system he absolutely needs it. I'm very scared too, but I'm scared either way...it's a crap shoot. Don't give it to him and have him contract the flu and get very sick or take the chance with the shot that he may have side effects that are bad too. It's a very debatable topic, but every doctor or nurse that I talk to about my son has told me he really needs it. I do think it's strange that they started with the "live" mist vaccine rather than the deadened shot that all the critical patients would need! We're leaving for Florida (Disneyworld) in a couple of weeks and I'm praying that nothing happens before then or he doesn't catch anything down there. I'm going to ask my doctor about masks maybe for him on the airplane...scary stuff!!
- By JaiJai
- Posted October 13, 2009 at 3:54 pm
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I'm very skeptical about the N1H1 vaccine. I have FGS which you know weakens the immune system just being a chronic disease but I am not on any meds that are weakening my immune system further. I got the flu shot this past week and was told by the nurse to absolutely get the N1H1 vaccine, but my nephrologist said to just get the regular flu shot. I understand that it is different for me (26yrs old) and children. I think you are taking a 50/50 chance either way. Just like stated above, the shot could have side effects and make your child sick, or without the shot there is the possibility of the swine flu as well. I know EXACTLY how you feel, although not a parent, but trying to decide what is best for me. The whole swine flu issue terrifies me and I am undecided as well on what to do.
- By Kristie13
- Posted October 13, 2009 at 10:06 pm
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I am on the fence as well. My daughter is 6 years old, on pred (though currently tapering), Prograf and cellcept. She will get the regular flu vaccine, and her neph says she needs to get the H1N1 vaccine as well. She would get the shots, not the live nasal vaccine obviously. But I'm hesitant and still not sure what to do. I want to protect her but also understand that by giving her the vaccine, it's possible that she could get sick. I think I'll do more research and talk to her pediatrician. And pray about it.
- By Fosh
- Posted October 14, 2009 at 11:20 am
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I have just been told by our neph, that my son should have the flu vaccine and the rest of the family should also have priority on flu jabs, so we don’t take illness back to Dylon. Me, my husband my daughter and the grandparents have all had the jabs and this year Dylon was due to have his in early Sept (the earlier the better they say) The only thing is he relapsed and is back on high dose steroids. The neph said that the reason they don't like to give the flu jab to our children at times, is because being on high dose and immune suppressed drugs, the body has not got the defence system to build immunity and therefore the flu jab cannot be relied upon for its effectiveness. So I guess it could be a waste of time, we have been advised to reduce him to 10mg daily before he is given the jab. We will then be giving it to him, I just hope he doesn’t catch it while we wait.
As far as the swine flu shot, im not sure myself. All I know is it most definitely cannot be a live vaccine that is given to them and that stands for any live vaccines. I assume that if they are immune suppressed then it will have the same effect as the normal flu jab and may not work. I then ask myself is it worth the risk for a very new unsure drug when we are not sure the body will build the immunities anyway.
- By AidansmommyNS
- Posted October 14, 2009 at 12:37 pm
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Are they even offering the H1N1 in shot form? From what I've seen it only comes in the nasal spray. Our neph said our son needed to get a flu shot but NOT the nasal spray as the shot is a dead virus which cannot give you the flu. However, the nasal spray is an actual live virus you must fight off. Therefore people on immune suppressants should NOT get the nasal spray. The other thing our neph reminded us of was that even the shot may be ineffective on people using immune suppressants as the whole purpose of the shot is to infect antigens for your body to fight off and build an immunity to. Even though the antigens can't get you sick if your body has a weakened immune system it may not build up the necessary antibodies the shot is designed to build making the shot ineffective. So if you are having a question about the negative side effects of the vaccine and their isn't even a 100% chance it will do anything to protect you or your children it may be wise to air on the side of caution. I have not yet decided if we will get my son the vaccine as he has been on prednisone for 6 months straight now and I'm not sure how well his immune system will react, especially to something not highly tested and reviewed yet. Good luck!!!
- By ChrisandMom
- Posted October 15, 2009 at 4:30 am
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Yes they are offering the vaccine in needle form that is not live virus. Its just that the spray is faster to produce and easier to get kids to take. No needle-phobia. There are not that many live needle vaccines left anymore. MMR, and Chickenpox I think, and Polio. And I'm not sure about the polio. Thankfully our son is 14 and has had all those long before he was diagnosed. He had his seasonal vaccine late september.
If you do want to get them vaccinated for H1N1 you can call your local county health department and they can tell you who will be getting the needle form. Only the immune deficient person need worry about it. healthy family can do spray.
- By Shermil
- Posted October 15, 2009 at 11:32 am
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The swine flu just hit my daughters school yesterday. There were two confirmed cases. My husband and not me for once is FREAKING out. He wants to pull her out of school right now. But if we pull her how long will she have to stay home? This isn't going to go away so how can I just hide her in our house and never let her leave? I don't know what to do. I just talked to our Neph today and they also said to get the H1N1 shot. We have an appointment on Monday to see our Neph so I'll talk to him more about all of this. My daughter just stopped taking Perdnisone three days ago so her immune system is still pretty weak and she is still on the Cytoxan until Ocotber 29th. She has however been in remission for 10 weeks now. My child has not ever been in remission for this long, this is by far the longest she has been testing negative. I'm curious to see what you all decide on this shot so please keep us all posted on what you do.
- By slyviam
- Posted October 15, 2009 at 11:41 am
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I would do whatever my doctor recommended. Some years back my son's doctor recommended we get a chicken pox vaccine which we didn't and after catching chicken pox from a friend he was hospitalized for 10 days with a case that had just about every doctor coming to look at him - he had so many spots and in so many places I couldn't believe it. He was on prednisone at the time. sylvia
- By kcsmommy
- Posted October 15, 2009 at 12:40 pm
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I want to thank everyone for your comments. I have taken my son out of school (it's only Preschool) and I am going to get him the H1N1 vaccine as soon as it is available. We go to Akron Children's Hospital in Ohio and our hospital is going to get it mid-October, so basically anytime now. I am also going to find out how long it will take to become effective once he gets it (I've read it can take up to 4 weeks). I've asked them to call me as soon as they have it. I feel sorry for him since he is missing out on his school and his new little friends, but I finally made this decision and now I am sticking to it. I do have the same concerns as Fosh and AidensmommyNS. Once he gets the shot, how likely is it that it will be effective since his immune system is suppressed? I don't know. But, I am putting my trust in his Nephrologist and I can now just hope and pray that I am doing what is best for my son.
For those of you concerned about it being a live vaccine, I do know this - there are 2 forms of the H1N1 vaccine. The nasal spray and the shot. The nasal spray DOES contain the live virus. The shot DOES NOT. Since my son is on immunosuppressive drugs, he will get the SHOT.
Shermil, I understand your concerns. It's a tough call. My son is only 3 and although he is very smart, he doesn't fully understand the importance of hand washing/not touching his nose or mouth/using hand sanitizer, etc... I can't give my 3 year old Purell and tell him to wash his hands as often as possible and send him off to school. But, older children may be able to do these things very easily. I'm watching the news and hearing about over-crowded ER's because people are afraid they have the swine flu. I think the media has blown it way out of proportion and I think that most healthy people will have flu-like systoms and be just fine in a few days. The people who need to go to the ER if they have symptoms are people with "underlying conditions" - like Kidney disease, Diabetes, Lung/Heart disease, etc...
As a mom, I just want to protect my son the best I can and if he misses a few weeks of school, it's not the end of the world. I hope that by keeping him out of school and getting him the vaccine, I am greatly decreasing his odds of catching the flu - regular or swine. I can't remember a time when he wasn't on at least 2 immunosuppressive drugs. He relapses all the time, so I know how touchy his little system is.
Good luck to everyone and your children.
- By ChrisandMom
- Posted October 16, 2009 at 4:57 am
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kcsmommy said
"It's a tough call. My son is only 3 and although he is very smart, he doesn't fully understand the importance of hand washing/not touching his nose or mouth/using hand sanitizer, etc... I can't give my 3 year old Purell and tell him to wash his hands as often as possible and send him off to school. But, older children may be able to do these things very easily."
Don't be so sure about the older ones...lol. Our kiddo has a cold the first week into school because he doesnt 'get it' that he has to be cautious more than normal. Teenagers have screwy priorities. Just trying a little humor, since this season has so many of us on pins and needles.
Chris turned up with a low fever this week and is having positive dip tests so its a call to Children's in the am. So his h1n1 may not happen for awhile. Oddly the ever is the only symptom.
we wish the best for everyone.
- By LizCam
- Posted October 23, 2009 at 11:17 am
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Very tough decision. My son will get the shot because his neph strongly advises it. I have two other sons and wonder if they should/can get it too.
I have people telling me not to get my kids vaccinated, but that is easy to say when some of these people don't have kids, much less one that has a chronic kidney disease and has a suppressed immune system!
Good luck to everyone, and God bless all these babies and keep them safe!
- By MooseMom
- Posted October 23, 2009 at 8:01 pm
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I would think that you'd want to have your son immunized because he is in THREE high risk groups...he is between the ages of 6 months and 24 years AND he is immunosuppressed AND he has an underlying medical condition.
The swine flu vaccine is just as safe as any other flu vaccine; it is manufactured in exactly the same way as other flu vaccines have been manufactured for years. For the life of me, I can't understand why people would be so freaked out about this particular strain of flu when there is a vaccine for it just like there is for the seasonal flu.
Although I am not a child, I will be first in line Monday afternoon to get my swine flu shot. I've already had my season flu shot. I have been fighting FSGS for years now, and I absolutely refuse to have all of my efforts derailed because of a stupid virus against which there is an innoculation.
My stepson's high school has been closed since Wednesday and won't open again until Friday. It was reported about on the national news; 900 kids called in sick, and my stepkid was one of them. I'm taking no chances.
- By kcsmommy
- Posted October 23, 2009 at 9:09 pm
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Thanks, Moosemom. I've already made up my mind that my son will get it ASAP. I call my son's hospital every other day to see if they have the H1N1 vaccine yet. As soon as they get it, he will get it! Good luck to you and your stepson.
- By ctrb
- Posted October 24, 2009 at 3:32 pm
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I also haven't decided yet about vaccines since my son with NS has a hx of being allergic to eggs, which are in the shot. But did want to make an additional comment about the live virus nasal spray. I think we all agree about not giving the NS or FSGS person the live virus nasal spray but I would think we wouldn't want our close family members getting that one either since it is possible to be contagious for up to 21 days with H1N1. CDC website says in regards to nasal spray "In clinical studies, transmission of vaccine viruses to close contacts has occurred only rarely." So it is still possible..... Good luck to everyone in your decisions and making it through this difficult flu season.
- By LauraG
- Posted October 24, 2009 at 8:36 pm
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After much debate my daughter is going to get both shots. My daughter has MCD and is on levamisole and EOD pred 8mg and is allergic to eggs (severely to the yolk and less to the white which is what the shots are mostly made in from my understanding). She is going to get the preservative free H1N1 shot (if I can find it) first since that is what is going around now. Then we will wait a month and all of us, inc her, are going to get the seasonal preservative free flu shot. We are not getting the seasonal flu first, bc her body will be busy building antibodies to that, making her more susceptible to the H1N1 that is currently going around.
And we were told by our doctor (who spoke with the Infectious Disease attending) that no one in our family should get the nasal spray bc of the chance of spreading it.
I too welcome any and all opinions and greatly appreciate all of the posts on this topic. It i SO hard to weigh the risk/benefit in this situation.
- By steff3
- Posted October 26, 2009 at 7:49 pm
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I am not sure if the swine flu vacine will have same effect as flu shot. But my son is currently on prograf and preds and his neph dr told us that if he got the flu shot that he has a better chance of relasping. My son is in second grade and he is in a home bound program right now cause I am scared to send him to school with everything going around we have been on both preds and prograf since may and have not been able to come off the preds at all.
- By mommytoava
- Posted October 27, 2009 at 8:47 am
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We my 3 year old and myself 3.5 month pregnant have both gotten the H1N1 and seasonal flu vacc. We had absolutely no problems at all and I am so glad that it is over with so there is no more worry there. She does need 2 of each so I am only giving her 2 of the H1N1 on two of each as she has no immunity to H1N1 but am sure since she has been on this planent for 3 plus years does have some immunity to the regular flu. In addition my daughter is on pred and cellcept, my husband got the flu mist (against my wishes) and came home after gettting it. Ava spiked a 102 temp for about 4-5 hours and she and I felt sort of off for about 3 days. She went from neg protien to trace during that time. So yes to the shots no the mist, and no to the mist for anyone else in the direct contact of the child. Best wishes. Ashley
- By MacLean
- Posted October 27, 2009 at 12:41 pm
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I have just read through all of this thread on H1N1. Like many others I have not been sure what to do. My neph called me on Sunday to say that the vaccine is now in BC. I will be going this afternoon to get both my seasonal flu and H1N1 together ... one in each arm.
Since diagnosis (eight years ago) I have been on immunosuppressants and because my WBC count is so low I feel it is imperative that I get these shots. The last thing I want to do is get very sick and stress my kidneys to the point of shutting them down.
Everyone has a choice to make and I have made mine. Good luck to all of you and your precious children.
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